“I was nine when I had my first seizure. It was a hot summer morning when I awoke in my bunk bed in rural New Hampshire–I was spending the week at my first ever sleep away camp. My cabin mates swarmed around the bed as my eyes heavily opened and shut when I heard the quietest girl in our cabin timidly say, ‘Laura, you had a seizure’. The bright sunlight beaming through the window added to the sensitivity of what I could only assume to be a migraine as I looked at her with a furrowed brow. What did she mean? I don’t even know what a ‘seizure’ is. That would never happen to me.
One year later, in a dimly-lit neurologist’s office, I was proved wrong. I did have a seizure. I had multiple seizures, and now, I had something he called ‘epilepsy’. It took me a month to learn how to pronounce that word. I was ten.
It was a Tuesday morning going into my neurologist’s office, and a Tuesday morning when I left with my mom. I was walking in as Laura, but left with epilepsy.
There is no guide book for being diagnosed with an incurable brain disorder.
So, I guided my ten-year-old self as best as possible.
A few years after my diagnosis, I discovered something called pageantry. I was thirteen when I opened a letter in the mail addressed to me. It was from my local state pageant inviting me to participate in the Miss Massachusetts Pre-Teen pageant, as someone in my community anonymously nominated me.
I was elated and curious. I had butterflies all in my stomach.
Someone thought I was beautiful enough to be in a pageant?
I signed myself up immediately, without my parents knowledge.
If you are to know anything about me as a little girl, it was that I hated being the center of attention. It would bring me to tears. My mom was often in the wings of school recitals, anticipating a teary-eye episode at the start of the first song. I most often met her arms with a stuffy nose and puffy eyes, my spirit riddled with fear of judgment.
But pageantry was different. Every year, I would enroll in my optional Spokeswoman competition and give a three minute speech on epilepsy. I learned at a young age the word advocacy, and I fell in love. I continued on to win my state pageant and place third in the nation, carrying my story of epilepsy with me in every interview.
To see the change, we have to be the change.
Despite my often crippling fear of the stage, I would brave the stage and fight to be seen. I spoke about epilepsy to anyone who would listen.
I came out of my 10 year pageant retirement this year. I participated in Miss Florida USA this past May and placed in the Top 15 out of 73 incredible women. I wore only purple for the whole weekend, to continue making epilepsy visible.
I still get butterflies before stepping on stage but not out of nervousness anymore. Out of resilience and fighting the good fight.
Out of the hope that maybe one young girl watching me has epilepsy. I may not have the guide book all figured out, but I might just help lead her to writing her own beautiful story.
To this day, I still don’t know who anonymously nominated me. But if that person is somewhere reading this please know– thank you for seeing my story before I knew what it looked like. Thank you for hearing my voice before I even knew what it sounded like.
Have a safe + seizure free day :)”
Laura
Florida
